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Topic: New To Forum Also (Read 3124 times)

Suspected ARS in December of 1982. Tested positive 12 years ago. 28-29 years infected.One of the ‘most fortunate,’ until recently. I always had a CD4+ around 850, VL around 2,000. Been in studies at NIH for 9 years having, white blood cells drawn for vaccine research twice a year.

Unfortunately, after all these years, the virus finally mutated and found a way around my relative immunity. Last CD4+ 480, VL 139,000. Started Altripla two weeks ago. Well cared for at Mass General. Experiencing some side effects.

I live in a very small rural community in Maine. No support groups up here. I guess going through all the turd that most feel when they first discover they are positive, although I’ve known for ages. All of a sudden it is “life or death,” rather than participating in the scientific process of ending this nightmare for all of us. Besides health ambivalence now, a major ego blow. No more “being special and somewhat unique.”

Looking for some support or friendship or help during these early days. Don’t know what to expect or where I am going. Doc says HIV will in no way play a significant role in the longevity of my life. But still feeling pretty hurt and harmed, and not sure what’s coming next.

Welcome to our little club. I can totally relate to living in a small rural community without local support. Becoming a regular member has negated that and I hope you find as much value and support here as I have.

Take care and best wishes.

Wolfie

Logged

Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Suspected ARS in December of 1982. Tested positive 12 years ago. 28-29 years infected.One of the ‘most fortunate,’ until recently. I always had a CD4+ around 850, VL around 2,000. Been in studies at NIH for 9 years having, white blood cells drawn for vaccine research twice a year.

Unfortunately, after all these years, the virus finally mutated and found a way around my relative immunity. Last CD4+ 480, VL 139,000. Started Altripla two weeks ago. Well cared for at Mass General. Experiencing some side effects.

I live in a very small rural community in Maine. No support groups up here. I guess going through all the turd that most feel when they first discover they are positive, although I’ve known for ages. All of a sudden it is “life or death,” rather than participating in the scientific process of ending this nightmare for all of us. Besides health ambivalence now, a major ego blow. No more “being special and somewhat unique.”

Looking for some support or friendship or help during these early days. Don’t know what to expect or where I am going. Doc says HIV will in no way play a significant role in the longevity of my life. But still feeling pretty hurt and harmed, and not sure what’s coming next.

-fisher

Why do you think your "ego" is invested in your immune response? I dunno. You've lived through it ALL. You must know quite a but about HIV and how immune defenses is a bit of a crap shoot. You even know now that your virus mutated, unfortunately, ending your long run... So what has this got to do with ego? Hurt and harmed?? I am curious, I would like to understand this a bit better, if you care to flesh it out some more. Geez you participated for a very long time in science that can help us all. Pat yourself on the back and don't take your infection's new virulence as meaning anything about your value or self esteem.

I want to welcome you and reiterate what your Doctor says. Really, its not life or death for you.

Its drugs and life... A lot of us get this message now pretty quickly, when we seroconvert. The ID's tell us - please, don't put on a mindset from the old days.. The drugs are great, you will be fine. It takes some of us a bit longer than others but most people eventually chill out. This never had to sink in, for you, because it wasn't necessary. But now that you will take drugs, and you HAVE heard the message, that your life goes on as planned, and you won't be getting sick, I hope you have a new blessing, and chill out quickly enough. A few months into the HAART I think you'll look back to this moment and be relieved that the stress and fear and anguish is gone.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

The ego bust, simply that I felt special and unique and thought I was part of the process for the cure. The truth, I am in the same life-boat as everyone else. The good part. I am here now. We are here now, and can live to full extent and longevity as anyone, everyone.

I know quite a bit about research and HIV. Things like, although is seems otherwise, there's no difference whatsoever between a VL of 87 or a VL of 147. But I do not yet know how to say to another . . . do not fret or worry.

They fly my down from Maine and put me up. But I think that as I am now on medication I no longer can be considered as part of the LTNP cohort. Maybe other studies. You would think being so steady for so long then having an almost overnight viral control collapse could help the sceintists in their knowlege as what changes in the blood or immune system when viral escape occurs. Will know in a few months whether or not I am invited back down to NIH. Too "deflated" right now to call and ask. I doubt it.

A long, long time ago, for an unrelated health issue, I took an HIV “phone test.” When I called, a recorded voice said, “we are now switching you over to a counselor.” I hung up immediately. This was just when the first success with triple-drug therapy was beginning to be reported.

Learning I was infected with HIV kind of drove me a bit crazy.

Then, I learned how to use the Internet and tried learning all I could about HIV. I realized that something was very, very, wrong, but very, very good, something very strange was happening with my CD4+ and VL. Having been in a monogamous relationship for 12 years and my partner ending up negative, I should have been very ill by then.

Finding out I had immunity made we twice as crazy, feeling special and gifted. I quickly connected and plugged into the researchers, first at Mass General, then at NIH.

And I’m in the same situation again. Like I just discovered for the first time that I am HIV positive. Finding that I am vulnerable has once again made crazy. And all my Internet research now points to new things that are very scary.

I am 56, not a cute cub anymore. Well. Maybe still a little cute. . . And what I read is that HIV can make older people age faster and have other types of normal aging problems, just quicker.

Getting my first CD4+ and VL since starting meds on Tuesday. Not sure if the meds are working or if my body is tolerating the meds or having other issues.

After that hurdle, if all goes well, I hope for “smoother times” and the disciplined “long haul” of drug taking to continue to defeat this enemy of mine.

Maybe you need to step back from the Internet research if you are "learning" things that, from a distance, sound alarmist if not also downright inaccurate.

Also, you are not "immune", you were from the get go HIV positive. There are some people who ARE immune but if you are positive, you are not one of them.

Going forward, you can think about your many years contributing to the science as your big contribution to the fight against HIV and AIDS.

HAART is very effective. I don't know what you are reading but you should probably look forward to a normal life this year, and the following years, and a normal life span.

I hope when the crisis and fear wears off, you can find value in your uniqueness and your specialness and that your worth doesn't have anything to do with this stupid virus. Find something about your life, your work, your friends or family, your projects, to see as valuable and your special contribution to the world. Something that does not have anything to do with HIV - either being just another HIV+ person on HAART, or having once been a long term non-progressor.

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx

The first hurdle over. My body has had no adverse effect to Altripla. And the only issue, besides excessive farting, is taking two or three hours to fall alseep.

The doc says it could be 3 months before reaching undetectable. I thought the meds shut down replication immediately. That surprises me.

Beginning to return back into balance. Although I've been infected for a very long time, I think I experienced the viral escape and being for the first time vulnerable as if I just found out I was postive for the first time.

It was very tough on me. Threw me way out of balance in heart and mind . . . for an absolute fruit loop. I have great empathy for eveyone newly diagnosed now.

Lots of fretting and fear that did me no good at all. My next hurdle, to see if the meds are working. This time, I'm not gonna drive myself nuts worring about it.

The first hurdle over. My body has had no adverse effect to Altripla. And the only issue, besides excessive farting, is taking two or three hours to fall alseep.

The doc says it could be 3 months before reaching undetectable. I thought the meds shut down replication immediately. That surprises me.

Beginning to return back into balance. Although I've been infected for a very long time, I think I experienced the viral escape and being for the first time vulnerable as if I just found out I was postive for the first time.

It was very tough on me. Threw me way out of balance in heart and mind . . . for an absolute fruit loop. I have great empathy for eveyone newly diagnosed now.

Lots of fretting and fear that did me no good at all. My next hurdle, to see if the meds are working. This time, I'm not gonna drive myself nuts worring about it.

-fisher

The HAART will work. Though its human to worry about it.

Getting a diagnosis in the years you go yours, was a helluva lot worse than today. Today most newly diagnosed should get the same message pretty quickly from the doctor: "HAART works, HIV infection is manageable, please go with your life as planned...."

Logged

“From each, according to his ability; to each, according to his need” 1875 K Marx